Friends of NCBDDD Group Overview Name

The Friends of NCBDDD is a coalition of government and private sector participants who work together to enhance the mission and activities of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) in identifying the causes of birth defects and developmental disabilities; helping children to develop and reach their full potential; and promoting health and well-being among people of all ages with disabilities, including blood disorders.National Center on Birth Defects and Developmental Disabilities (NCBDDD)

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) strives to help people live to the fullest. It focuses on those that are especially vulnerable to health risks - babies, children, people with blood disorders, and children and adults with disabilities.

NCBDDD works across four thematic areas using a public health approach: 1.Saving Babies through Birth Defects Prevention and Research. Every 4 ½ minutes, a baby is born with a major birth defect in the United States. That’s 1 in 33 babies. NCBDDD identifies causes of birth defects, finds opportunities to prevent them, and improves the health of those living with birth defects. 2.Helping Children Live to the Fullest by Understanding Developmental Disabilities. More children than ever before are being diagnosed with developmental disabilities. For instance, Autism Spectrum Disorders (ASD) now affect 1 in 68 children in the U.S. NCBDDD works to provide essential data on ASD, search for risk factors and causes of ASD, and develop resources that help identify children with ASD and other developmental disabilities as early as possible.

3. Protecting People and Preventing Complications of Blood Disorders. Blood disorders - such as deep vein thrombosis, hemophilia, and thalassemia - affect millions of people each year. NCBDDD works to reduce the public health burden of blood disorders by contributing to a better understanding of blood disorders and their complications; developing, implementing and evaluating prevention programs; providing information to consumers and health professionals; and encouraging action to improve the quality of life for people living with these conditions. 4. Improving the Health of People with Disabilities. In the United States, an estimated 57 million people live with a disability. Through public health efforts, such as tracking, research, and health communication and education, NCBDDD aims to reduce health disparities and the incidence as well as the severity of additional physical or mental health conditions that occur as a result of having a disability.

Executive Committee Members Secretary Jennifer Bolden Pitre, Family Voices Jennifer Bolden Pitre is a Parent Leader and the Mother of youth with special health care needs. Jennifer is based in Cherry Hill, NJ where she works for Family Voices as the Program Coordinator on several Alliance for Innovation on Maternal and Child Health (AIMS) grants & also as the Family Liaison to the Friends of the National Center Birth Defects and Developmental Disabilities. Communications Chair Shannon M. Haworth, Association of University Centers on Disabilities Shannon M. Haworth is a Program Manager for the Public Health team at Association of University Centers on Disabilities (AUCD). Working under the supervision of the Director of Public Health she implements capacity development activities and technical assistance for the AUCD network, under a cooperative agreement with the Centers for Disease Control and Prevention (CDC) & National Center on Birth Defects and Developmental Disabilities (NCBDDD). Member at Large Patrick Johnson, American Academy of Pediatrics Patrick Johnson is an Assistant Director for Federal Affairs at the American Academy of Pediatrics, covering a range of issues including children with disabilities, newborns and infants, school health, sports medicine, infectious diseases, military health care, health information technology and medical liability. Mr. Johnson also helps lead AAP’s appropriations efforts. Barbara Kornblau, Coalition for Disability Health Equity Barbara L. Kornblau, J.D., O.T.R., FAOTA, is an attorney, a health policy wonk, founder of the Coalition for Disability Health Equity, and a Professor of Occupational Therapy at Florida A&M University, where she teaches by distance. She previously served as Director of Health Learning for the National Blood Clot Alliance under a grant from NCBDDD. Kate Taft, Association of Maternal & Child Health Programs Kate Taft, MPH, is the Senior Program Manager for Children and Youth with Special Health Care Needs (CYSHCN) at AMCHP and assumes a lead role on issues surrounding CYSHCN, birth defects and developmental disabilities and early childhood. Specifically, she manages AMCHP’s grant portfolio and budget related to autism spectrum disorders and other developmental disabilities (ASD/DD).

Champions The Executive Committee needs your help to serve as a Champion in one or more of the focus areas listed above. As a Champion, you would recruit Friends who have an interest in the particular focus areas as well as have the opportunity to provide content area expertise, join the newly formed Friends Communications Committee to coordinate messaging, and help tailor specific messages for key target audiences. The Executive Committee is looking for Friends that have expertise in communications, marketing, government relations, and family member experience. The time commitment would involve a 1 year term, with an option to renew for an additional year. It would also involve a monthly commitment of 1-2 hours, including joining the Communications Committee calls. Click here to read more about the specific responsibilities of a Champion.Click here to read more about the specific responsibilities of a Champion.